Most meds don't help autism, studies show
April 4th, 2011
11:31 AM ET

Most meds don't help autism, studies show

Better studies that show which therapies work  best for which children with autism spectrum disorders are needed, because most of the current research used to weigh treatment options today is lacking, according to new research published Monday.

When 1 in 110 children are affected by the same disorder where there's no definitively known cause or effective cure and in many parts of the country insufficient treatment options, determining how to best treat your child can be a huge challenge.

This is what parents of young and older children with autism face every day.  People who have this neurological disorder can have multiple symptoms that affect their ability to communicate, impair their social behavior and display repetitive behavior.  Many therapies and medications are offered to help patients with this disorder which affects patients for as long as they live, but there's not necessarily a consensus on what works at all or works well.

So the Agency for Healthcare Research and Quality, a division of the Department of Health and Human Services, decided to take a deeper look at the existing research. The  AHRQ recognized that care for adolescents and young adults with autism  varies greatly from provider to provider and that the people making decisions about treatment – family and health care professionals – had little solid information on which to judge.

Three studies published Monday in the journal Pediatrics, provide some data from this very large report. One article examines the effectiveness of intense early behavioral therapy in children with ASDs;  the two others look at medications that are often prescribed to treat children with autism, with one study focusing specifically on a hormone called secretin. The research was done at Vanderbilt University in Nashville, Tennessee.

Secretin is a hormone commonly used to treat peptic ulcers and test the function of the pancreas. Over a decade ago, a report was published that described three children with autism showed improved behavior after being treated with secretin. However, in recent years its efficacy has been questioned, and this new review of seven studies suggests that secretin is no more effective than placebo.

When something clearly does not work it's important to inform parents and physicians, so they don't waste precious time, possible side effects and money on something that doesn't work, says Zachary Warren, director of Vanderbilt University's Treatment and Research Institute for Autism Spectrum Disorders (TRIAD). [Secretin, he says, "is one of the few areas where we feel we have solid high evidence."

"The evidence is pretty high that that this particular intervention does not work," he says.

The article "A Systematic Review of Secretin for Children With Autism Spectrum Disorders" concludes that studying secretin as an autism treatment is no longer warranted. In a time where every research dollar is cherished, knowing where not to spend research money is helpful too.

Dr. Geraldine Dawson, chief scientific officer for the advocacy group Autism Speaks, which funds a lot of autism research including some of Warren's studies, agrees with the study authors' assessment. She says "for secretin the question has been answered."

Dawson says this and the other two studies published Pediatrics are helpful because they provide more information about what doesn't work and what needs to be further investigated. "We still have so many questions unanswered about the treatments that are available," says Dawson.

As part of the "Systematic Review of Medical Treatments for Children with ASD," Vanderbilt researchers focused on the commonly prescribed medications, says Warren. They include antipsychotic drugs, serotonin-reuptake inhibitors (SRIs) or antidepressants, as well as stimulants and other medications for hyperactivity. None of these drugs are used to treat what's known as the "core symptoms" of autism: communications and social impairments and repetitive behavior.

The review found that drugs do little good. "Although many children with ASD's are currently treated with medical interventions, strikingly little evidence exists to support clear benefit for most medications," the researchers said. Only two antipsychotic drugs,  risperidone and aripiprazole, which are FDA-approved to treat patients with autism, were shown to be beneficial. But Warren cautions that side effects associated with their use are so potent, even in short intervals, and include significant weight gain. Since children with autism grow up to be adults with autism, it's conceivable that they might be on drugs for a long time and taking a drug that can lead to weight gain adds to a patient's problems in the long run.

Warren says more research is needed to better weigh the risks and benefits of taking these drugs. Dawson agrees and points to a study published last year that suggests that when combining risperidone with behavioral therapy the outcome was better.

Dr. Eric Hollander, director of the Compulsive, Impulsive and Autism Spectrum Disorders Program at Montefiore Medical Center in New York, believes some patients may benefit from some antidepressants, and stimulants may work for some patients with autism. But much larger clinical trials need to be conducted to tease out which patients will see an improvement in their behavior. All the experts agree that none of these medications address the core symptoms of autism, which means research for those type of drugs needs to encouraged and supported financially as well.

One message that has become louder over the past few years is the need for diagnosing a child's autism as early as possible so intense therapy can begin as early as possible. The thinking is that when a child is 2 or 3 and the brain is still developing, intense behavioral therapy might reduce the disruptive behaviors and teach the child skills that will lead to greater independence as he or she gets older. The researchers who reviewed studies published between 2000 and 2010 found that two types different types of intensive behavior therapy (the Lovaas or classic Applied Behavior Analysis or ABA and the Early Start Denver Model) seemed to help children improve cognitive development, language skills. But ,the evidence that shows who benefits most is insufficient or lacking. Warren says in many cases, comparing existing studies was very difficult because in some cases the methodology was concerning and there wasn't any consistency in how the studies were conducted. For the current review, 23 out 34 studies were deemed "poor quality."
"This report points out that early intervention is effective, but we need more research to better understand which children respond and whether one model is better than another," says Dawson.

soundoff (140 Responses)
  1. Tina

    I am glad to see that this article actually acknowledges the existence of adults on the autism spectrum. Thank you!! A special light needs to be shone on adults with ASDs, especially OLDER adutls who did NOT have the benefit of being diagnosed as children. My sister was diagnosed at the age of 37, and she has found it especially difficult to find places that will offer services to older adults. This group MUST be included in the research and treatments! TH

    April 4, 2011 at 13:02 | Report abuse | Reply
    • Bec

      Yes, same with me. I'm 25 and I didn't even know I had Asperger's until two years ago. I was never treated or had intensive therapy. I'm not as bad as some people so I suppose it went unnoticed. There are no support groups for adults with autism spectrum; only for parents OF autistic children. I don't know anyone who's like me and I've spent my whole life feeling isolated.

      April 4, 2011 at 17:53 | Report abuse |
    • Lstrm

      Bec, Have you tried NAMI? Our local has a support group for practically everyone.

      April 5, 2011 at 00:18 | Report abuse |
    • Tom

      Nothing really works. Plenty of vacations help. Becoming a Alpaca herdsman might be satisfactory.

      April 5, 2011 at 03:01 | Report abuse |
    • Nicole

      I'm assuming from what you wrote that she is high functioning- in which case, there are emerging communities for adults with aspergers (this isn't help, but it is something). Treatment programs that cater to anxiety disorders, especially OCD, can also be helpful. You might find speech therapists that work with children on the spectrum helpful, too.

      If she is lower functioning and has difficulty with communication the same services that help adults with intellectual disabilities and developmental disabilities are usually the most suitable. Sometimes you'll have someone who is high functioning in some areas (such as a high intellectual ability) but unable to function, in this case supports for adults with severe mental illness may be more appropriate.

      There isn't much autism specific supports for adults, not yet anyway. But it's important to remember that it's not about who the program serves, but rather that it meets the consumer's needs.

      April 5, 2011 at 06:00 | Report abuse |
    • Sparrow

      Bec, there are groups of Aspies that get together using http://www.meetup.com. You may want to see if there's one if your area. I also want to note that the article did not address the effects of diet, naturopathy, and supporting neurodevelopment at any age. You may want to check out http://www.handle.org, for example.

      April 5, 2011 at 12:15 | Report abuse |
  2. Gonzo

    Hmm. Research concludes that more research and study is needed.

    April 4, 2011 at 13:18 | Report abuse | Reply
    • Gonzo II

      got it...just like everything else in research, more money is required to search out more answers that will require more money...

      the question is, what happens when the money runs out...

      April 4, 2011 at 13:54 | Report abuse |
    • frontgate

      Why would the money run out.
      The govt. can continue to fund it.
      raise taxes!

      April 4, 2011 at 23:44 | Report abuse |
    • Zontal

      The government spends about $100 billion a year on the NIH. Sounds like a lot, right? We're currently spending $6.7 billion a MONTH in Afghanistan alone, which is, for the math impaired, $80.4 billion a year. One military operation spends 4/5 of the entire NIH operating budget per year.

      In reality, the government spends, wait for it, 2% of the budget on scientific research. Wow. 2%. Gee, the defense department spends 20% and the VA spends 7%. So you are all criticizing the NIH? Shows what you know. But sure, let's cut money away from cancer funding to go drop more missiles on Libya. That's cost us $550 million so far.

      April 5, 2011 at 06:33 | Report abuse |
  3. Brent

    Check out this link to learn more about Applied Behavior Analysis (ABA).


    April 4, 2011 at 13:48 | Report abuse | Reply
    • Why Xazz

      ABA is torture, plain and simple. You may FORCE someone to modify a behavior, but that does not change who they are, nor reprogram their natural impulses – it only subverts them, causing long term psychological trauma.

      April 4, 2011 at 15:54 | Report abuse |
    • Anabelle

      Not every child will experience the benefits of ABA. As autism is not the same with all who are afflicted by it, not every person will see the same benefits with its use. We don't do ABA with our child, but we do do Risperidol and Celexa and a routine regiment. The Celexa actually made a remarkably larger difference in his behavior than previous therapies.

      Personally, my child would not tolerate ABA in the slightest. Picture guidance, speech therapy, routine, restriction of artificial colours and flavours, Risperidol and Celexa have helped a ton, as has water therapy and occupational therapy and physical therapy.

      I think the one thing people have to realize is that until there's a cause found for autism, current therapies only work to treat symptoms of it.

      April 4, 2011 at 22:53 | Report abuse |
    • Sandra

      I have a son who is 22 years old an Autistic. We have tried drugs like Ritalin, Strattera and drugs for anxiety. Nothing has worked. When he was younger a speech therapist used the ABA method. It worked. But when he was in school the teachers refused to use it. He graduated in 2009. And did well for a short time. He has a job but has had difficult time. He is now seeing a psycholgist that works with adults that are autistic. My son is a wonderful high functioning adult with Autism. I agree with the article that drugs don't work. For my son there are 2 reasons. He has asthma and the medications could cause breathing problems. The second is that he has a problem with the sensory part of his brain. I am hoping as my son gets older life will get better for him. At the moment I can best describe his behavior like a rotten teenager at times. But I will still give him all the support he needs.

      April 5, 2011 at 02:11 | Report abuse |

    Recent studys show and prove that marijuana helps people with autism. Its sad how the government will never realize this and even if they do i doubt they will legalize it.

    April 4, 2011 at 13:52 | Report abuse | Reply
    • Tommas

      Who is going to be able to make money off a plant?

      April 4, 2011 at 14:50 | Report abuse |
  5. Doozie

    What they need to study is the effects of diet and homeopathic supplements, not more chemicals! My son was 3 almost 4 years old, non-verbal, not potty trained, and unable to play outside if there were other kids out there. He had meltdowns, was shut down and not progressing very much - despite being diagnosed at 2 and receiving intensive ABA therapy.

    We cut gluten (wheat) and casein (dairy) from his diet, as well as began a regimen of enzymes, omega-3 with DHA, probiotics and vitamins with a kick of B6. Within a week he was potty trained. Within a month, talking in full sentences and able to engage in side-by-side play. NOW, he is a vibrant 8-year old, mainstreamed 2nd grader. Yes, there are still speech, social and other issues. He is in no way "cured." But, it certainly turned things around for us and other families.

    I would love to see a long-term study of this approach!

    April 4, 2011 at 13:56 | Report abuse | Reply
    • Sue

      Your comment caught my attention. I am trying to figure out the right regimen for my son – and have started vitamins, pro-biotics and omega 3's. I am struggling to understand if I have chosen the right brands, dosage, etc. I am considering a gluten/casein free diet for him, as well. The research has been overwhelming. I would love to get more details from you, if possible.

      April 4, 2011 at 15:50 | Report abuse |
    • Why Xazz

      Gluten! Vaccines! Leeches! Our family member with Autism is BROKEN – we must CHANGE them!

      Ever tried just asking an adult with Autism for advice or insights? You know, someone with 30, 40 or 50 years experience living inside a Autistic brain, with no assistance from psychologists, pill-pushers or quacks? How did anyone ever survive Autism before they were told how DAMAGED they were? I'm not saying its not a handicap – it most certainly is, but don't get suckered by that diet hocus-pocus. Sometimes people see what they want to see.

      April 4, 2011 at 16:00 | Report abuse |
    • Valerie

      I would also like to see studies done on homeopathic remedies (not just pharmaceutical drugs) so that we parents can avoid the snake-oil salesmen of natural remedies and just do what works, if anything does.

      April 4, 2011 at 16:19 | Report abuse |
    • Chai

      For "Why Xass," If a gluten-free/casein-free diet has helped some of these children, why are you so against it? A good parent helps his child thrive and does what he can to try to help the child lead a good life. Why do you have a problem with people trying a special diet that has helped others??

      April 4, 2011 at 17:37 | Report abuse |
    • Doozie

      For all the detractors, like you Why Xazz, all I can say is that I was one of you. I thought all this stuff was hocus pocus until I tried it. Figured the natural method couldn't hurt but might help. And it did. That's all the science I needed. As for "fixing" well, that wasn't my intention. My boy is beautiful and amazing just the way he is. I love how his mind works. I only felt like I was looking into his eyes and seeing someone in there that needed out. I wanted him to reach his full potential, whether or not he was cured or fixed was irrelevant. I simply wanted to give him the best possible care without loading him with a bunch of chemicals. And you know what? It worked. His autism is still very prominent, but he is verbal. He can read and write. He has blossomed in ways I was told never to expect. Is that really so wrong?

      Sue...if you stop back by this article, you can email me at writergeekdez at gmail dot com. PLEASE Why Xazz, do not harass me via email. I understand and respect your position, but please show me the same respect.

      April 4, 2011 at 17:57 | Report abuse |
    • ecmom

      My now 8yo, mainstreamed 2nd grader was non-verbal and diagnosed with autism at 3. The only intervention we gave was 2 years of preschool with an AU trained teacher and sensory integration therapy with an occupational therapist. He became mainstreamed in Kindergarten and verbally and socially progressed tremendously. He has a limited diet, doesn't eat vegetables, but loves breakfast foods (warm-eggs meat biscuits/toast/pancakes) and continues to do well. I did nothing to change his diet (he never exhibited intestinal difficulties, so didn't feel the need to!). I think many therapies and treatments take advantage of desperate parents. THey cost way too much money! I'm thankful prek & OT were all we needed. the prek was public education with my tax dollars at work.

      April 4, 2011 at 22:55 | Report abuse |
    • Gary

      See my reply below, Goggle Dr Kendal Stewart, Austin TX.

      April 4, 2011 at 23:13 | Report abuse |
    • Father of Gifted Son

      For many Gluten Free, Casein Free and Yeast Free is the cure. My son has an Asperger’s and a NOS diagnoses from a neurologist and a psychologist. Post diet and supplements he went from Special Ed to skipping second grade. Unfortunately the diet is very tough to start and if done right it might initially cause a yeast dye off and even more bad behavior. But for those who have stuck it out the results are fantastic. Be brave and contact Age of Autism for help.

      April 5, 2011 at 02:25 | Report abuse |
    • RM

      I'd love to see long term studies of the Gluten-free, Casien-Free diet. My son was diagnosed with ASD at 3 1/2, and after 6 months of GFCF diet had a drastic physical improvement, including communication development. He's 6, and we continue GFCF, and now starting to talk clearly; answering and asking questions, opens presents, and smiles and laughs often!!!

      April 5, 2011 at 07:37 | Report abuse |
    • Jenny Diehl

      I have a similar experience with my son, he's 3 years old and was diagonsed with Autism and we immediately put him on the gluten/casein free diet and started him on supplements and noticed a big change within a week. We use the Isotonix vitamins that I actually sell on my web portal (www.marketamerica.com/jendiehl) and am thrilled with the results. The Isotonix products have SUPERIOR delivery, NO waste and absorb fast, it's a powder you add water to and drink so it's easy for a 3 year old to take and can even be made into popsicles. I use the Isotonix Spectrum Might a Mins (developed ESPECIALLY for children on the spectrum) and the Isotonix b-complex and the Isotonix Digestive Enzymes with Probiotics as well as some others (like Isotonix opc3/ anti-inflammatory/anti-oxidant) and Ultimate Aloe Juice. There is definately a direct link from their digestive system to their brain function. I would highly recommend the book, "Healing our Autistic Children" by Dr. Julie Buckley she explains the bio-medical interventions and the reasons WHY they help.

      April 5, 2011 at 13:28 | Report abuse |
    • Dr. Sheri Brown

      Amen! This is exactly what we did for our son, Christopher who is now 16! He has been in a mainstream school system since kindergarten. This summer he is going to be involved in a "pilot program" at a camp designed especially for "Aspies." He will be trained as a junior counselor to help other lower functioning "Aspies." Check out their website: http://www.extremesportscamps.com and check out the channel 7 story.

      April 11, 2011 at 22:49 | Report abuse |
    • Dr. Sheri Brown

      Doozie and whoever else is interested:

      Check out my fabebook page for the related article and why autism has a digestive piece that confirms why the regime you and others use works "most" of the time.

      April 11, 2011 at 23:09 | Report abuse |
  6. Anne-Marie D.

    It is very sad they are putting these children on anti-psychotic drugs! They have horrible side effects and the children can't even express the side-effects. I have studied Floortime, which is an autism intervention that was designed by a doctor of child psychology and is play-based. ABA can be very harsh if used as the main therapy!! It gets almost all the funding in schools and research. Diet based interventions work! It usually is a combined approach of many disciplines. Including horses. It's just very costly, and these families need our support! The pharmaceuticals can't make a PROFIT out of these therapies though, so why research them? Money, money,money! It is sad. My prayers are with these wonderful parents who do so much and get so little support.

    April 4, 2011 at 14:24 | Report abuse | Reply
    • rh

      As for diet-based interventions, without proper testing you can kill the child. There are illnesses that make people require complex carbohydrates or die, and others, like mine and my autistic son's, that require high protein and low carbohydrates.

      Anyone who is foolish enough to believe that diet-based interventions are one-size-fits-all deserves what they get.

      April 4, 2011 at 15:41 | Report abuse |
    • Not Bill

      "It is very sad they are putting these children on anti-psychotic drugs! "

      Um, the whole point of this article was that the researchers found such drugs to be no good. How do you find fault with people who agree with you? Did you even understand the article?

      April 4, 2011 at 23:36 | Report abuse |
    • brainstem

      Resperidone is now generic - probably adjunctive role to manage aggressive behavior

      April 5, 2011 at 07:46 | Report abuse |
    • mom to 3

      My son has been on Respirdol years ago, and now takes Geodon (an anti-phychotic medication). I have to say it has been one of the best things for him. Until you've dealt with a raging 5 year old when it takes all the stregnth you have to keep him from hurting himself or siblings, you can't really judge. My son is now 12 and over Christmas we tried having him come off the meds. The intense aggression is still there. He does work with therapist, has been through Occupational Therapy and is in a special program for kids with Behavioral and Emotional issues – but it's still there. Yes I would love for him not to need these medications, but he needs them to keep himself safe.

      April 5, 2011 at 09:06 | Report abuse |
  7. rh

    It is simple, really. Everyone used to think that cancer was one thing, that we would find a cure for cancer. Now we realize that cancer is many, many diseases, and something that may help in one form of cancer may do nothing or harm for another form of cancer.

    Until we recognize that autism is exactly the same way, we will NEVER cure autism.

    My son has gone from not speaking and not interacting at age 5 to an excellent student with decent social skills. He has responded to a medication for a rare genetic illness that has caused his autistic symptoms. And he also has responded to strict discipline consisting of rewards and taking rewards away.

    People want one magic bullet, they don't want to make their child go through a lot of testing for the right answer, they want the right answer NOW. Even my brother, when faced with medical proof that our family has a genetic illness resulting in autistic symptoms, refuses to test his 15 year old son who is significantly socially disabled by autism. He says he's had too many tests already. But what if the next test was the one to give the answer (like it was for my son)?

    April 4, 2011 at 15:40 | Report abuse | Reply
    • Siege

      I want a magic bullet so badly for my son. I would take a real bullet if the magic bullet could be given to him.

      Congratultions on your hard work to find what's right for your son.

      April 4, 2011 at 17:29 | Report abuse |
    • Scott H

      This! This is the truth. We were lucky enough to find a genetic cause for my daughter's autism-spectrum behavior. There are so many genetic syndromes that cause that sort of behavior – Fragile X, Smith-Magenis, etc etc.

      Autism isn't a disease – it's a large class of symptoms. It's like saying you have a running nose – it says your nose is running, but very little about why.

      April 5, 2011 at 10:28 | Report abuse |
  8. MrsMC

    I've tried antipsychotics for treatment of Asperger's. From my point of view, the side effects of risperidone are worse than AS. Too bad for me, neurotypical people do not see it that way. As near as I am able to figure, the purpose of combining risperidone with ABA is to suppress the personality of the autistic individual while writing a new one over it. I used to be a reasonably happy individual with Asperger's; since starting treatment, I've become a poor imitation of a neurotypical individual with frequent thoughts of suicide. I'd say, honestly, that what we really need is a society that's a little less rigid adn a lot less judgmental. Since we're not likely to get that any time soon, I guess sedation to the point of numbness and a robotic rewrite is the best we can hope for. Reminds me of a line from "House Rules": "It's a neurotypical world, ma'am. We're just taking up space in it."

    April 4, 2011 at 15:47 | Report abuse | Reply
    • Lstrm

      Have you ever gone to Crazymeds.com? It's a great site. You think you hate R now - what until you try to come off it!

      April 5, 2011 at 00:13 | Report abuse |
  9. tseaworthy

    Be patient, the truth will come out. Live healthy, love your children, do your research, and never give up.

    April 4, 2011 at 16:12 | Report abuse | Reply
  10. Arman Khodaei

    This article has some interesting points. Although, I think more research needs to be done. I am on the autism spectrum, and I think certain therapies can be very helpful. Empowerment of the autistic individual is the most important thing. I maintain a blog. Here is an entry I wrote on how people with autism see the world. http://www.armankhodaei.com/adventures-in-autism/2011/3/28/how-someone-with-autism-sees-the-world.html

    April 4, 2011 at 19:02 | Report abuse | Reply
    • Lstrm

      Thank you. I look forward to reading it.

      April 5, 2011 at 00:11 | Report abuse |
    • TheNumber

      @Arman – Thank you so much for posting the link to your blog entry. I have a 10 year old son who has Autism and the only reliable sources for learning about how his mind works is through great people like you sharing your experiences. I wish you a most awesome day of awesomeness, too!

      April 5, 2011 at 02:50 | Report abuse |
  11. Gary

    Google Dr. Kendal Stewart, Austin TX. for more on Vitamin B. My daughter started with Dr Stewart and was talking within 2 weeks, she is well on her way to mainstream classes.

    April 4, 2011 at 23:12 | Report abuse | Reply
  12. Anabelle

    I highly recommend that people take the time to read "The Way I See It" by Temple Grandin.

    Some people are going to find that while some things may work for one child, it won't work for another. All I can say is that before you do anything, consult your doctor and do lots of research. Read lots of books from people who experience autism first hand. There are plenty of books out there that'll give you insight into a world that without proper communication, we know very little about.

    Exhaust every single non-medicinal method of helping to treat the symptoms. Stop looking for a cure and start being proactive about doing what's best for your child. Be his/her champion because he/she may not be able to.

    My son was diagnosed in May 2001 and we're STILL looking for ways to help treat his symptoms. It's not going to be a one-size-fits-all treatment plan. You always have to try things. Be patient. 🙂

    April 4, 2011 at 23:20 | Report abuse | Reply
  13. Bill

    I have one question for the parents who use gluten free diets. How do you get them to eat? I have two sons with autism. The youngest is very tolerant of different foods although he has his favorites. The older boy will only eat cheese pizza or spaghetti with plain tomato sauce...period. Any attempt to feed him anything else results in meltdowns and eventually vomiting. We have tried everything we can think of and have been trying for years (he is 9 and was diagnosed with moderate to severe autism at age 3).

    April 4, 2011 at 23:33 | Report abuse | Reply
    • tjkimball

      Hi Bill, my 5-year-old son is also autistic who is an extremely picky eater, which is getting worse. Our son starts gagging and vomiting, too. Most of the time he just spits it all out. He only eats mac-and-cheese, yogurt and some pastas (no meat, veggies, or anything healthy for that matter). We tried the gluten/casein free diet for a year, but we gave up because it didn't seem to help at all. But, of course, everyone is different and what may fail to help my child might be the right answer for yours. We had to jump back to a regular mac-and-cheese-yogurt diet because his weight dropped dramatically. We also have him on chlonidine and zoloft, but I personally don't think it is helping. I accept my little one for who he is, but I hate the anxiety that overcomes him when he can't control his environment. Good luck to you!

      April 5, 2011 at 00:38 | Report abuse |
    • Owen's Mom

      My son is 9 years old and has battled with eating issues as long as I can remember. His diet for years was very limited and consisted mainly of chicken nuggets, macaroni and cheese and cheerios. I'm not sure where you are located, but I am in Minnesota. There is a lot of work being done here with feeding clinics that address the very issues some kids with autism face with food. I could go on and on telling you of all the troubles in the past, the melt downs, the vomitting, etc. I am happy to say now with years of feeding therapy my son is actually eating oranges and apples now! Its amazing just to hear the words "can I try that" instead of "I don't like that" without even smelling it 🙂 If you get a chance check out Fraser Child and Family Center in Minneapolis, MN....they run a feeding clinic....it certainly was the best thing for my son.

      April 5, 2011 at 01:18 | Report abuse |
    • Rebecca

      Does your child not like certain foods due to the nature of the food itself or could it be the texture they don't enjoy? I work with children with autism and some of them do not enjoy eating certain foods due to the texture. Could be a sensory issue for your child. One of my client's parent has also blended fruits and veggies and made it into a smoothie. That way he gets some nutrients while enjoying a smoothie.

      April 5, 2011 at 18:24 | Report abuse |
    • Bill

      Thanks to the folks that replied to my question. We live in Ohio. We have had a real time of it trying to get him to eat anything other than those foods I mentioned. Congratulations to those who have been successful. We will keep trying like so many others families like ours. I will share one of our successes with him. Like many other kids with autism, its almost impossible to get any medicine in him (pain killers, antibiotics). We would usually end up at the pediatricians for a shot. When we moved to Ohio our new pediatrician suggested we have his pain killers compounded by a chemist into a cream. He said it was common for older people with arthritis and saw no reason why it wouldn't be OK for a kid with autism. WOW, it worked really well. We use a syringe to get the right dose out of the jar and rub it between his shoulders with no complaints. Now if he gets an ear ache, we just give him the medicine. How many years we fought this and only one doctor recommended it.

      April 5, 2011 at 22:15 | Report abuse |
  14. MEA

    I'm surprised by the comments about ABA. Behavior analysis, at its core, is about understanding the behavior of the individual. All ABA programs are customized, individualized, to the needs of the person, as identified by that person, or the people closest to her/him. If someone comes to you with a manualized program and says they are doing behavior analysis, I would question their training and credentials. Ultimately, ABA is pragmatic – if it works, do it. As the father of behavior analysis is oft quoted – "the subject is always right"

    I have found the therapists doing ABA to be caring, fun, energetic people with great perseverance and compassion. Days can be long and hard and difficult, but these folks remain hopeful and upbeat, and make huge differences in the lives of people on the spectrum, and with their families. I thank them for their service and dedication.

    April 4, 2011 at 23:59 | Report abuse | Reply
    • Lstrm

      Thank you. You're right - ABA is individualized. It's not a cookie cutter program, though many tenets remain constant.

      April 5, 2011 at 00:08 | Report abuse |
    • Steph

      I agree with you, Mea – ABA is highly personalized to meet an individual's needs. If a child is non-verbal, they start with picture books to try to give them a way to communicate. If the child is verbal but non-compliant, different prompts are used. My husband provides ABA therapy to children and teens with autism – over the course of a year I watched him help a young boy go from non-compliant/disruptive to the point where he'd pee on other kids on the playground, to making eye contact and asking questions about others. It may not work dramatically for everyone, but there are programs available like this that are NON CHEMICAL that DO work.

      April 5, 2011 at 01:18 | Report abuse |
  15. Lstrm

    Question: In researching something else entirely, I came across a "throw away" line that stated that some toddlers who have been diagnosed with autism actually have untreated or under treated Lyme Disease. Anyone else know anything about this?

    April 5, 2011 at 00:06 | Report abuse | Reply
    • brainstem

      dead end - stay away from "chronic lyme" long term antibiotic therapy

      April 5, 2011 at 07:43 | Report abuse |
  16. Wendy

    I have a 19 year old son who I know has aspergers although he has not been formally diagnosed. Drs seem very reluctant to diagnose him. It isn't as bad as some I suppose. Drs like to give me the reason as it is a "wide spectum" and they don't seem to go much further with it. I have family and friends that see it. Living with him it is obvious. I would like for him to be properly diagnosed as I feel it would help him in certain life situations. What do you think? Any suggestions?

    April 5, 2011 at 00:08 | Report abuse | Reply
    • tjkimball

      I would say find a neurologist who will treat him accordingly. Only with a diagnosis can you receive the help you need – with occupational, speech and physical therapies and other services. We weren't able to get our son the help he needed until he had an official diagnosis. Now he gets Medicaid and services through our school district that he wouldn't have been able to get. Knock on doors until you have an answer. The squeaky wheel gets the oil. Good luck!

      April 5, 2011 at 00:44 | Report abuse |
    • Kristen

      See a neurologist, my 12 yr old , who by the way had been seeing a neurologist since she was 2, but he though I was overprotected and he blamed her actions and her unresponsiveness and lack of empathy etc on the seizures. But I switched to a new pediatrician and she met with my daughter for 10 min and said does she has Aspergers? I said no, but thanks for confirming my thought how do i get her probperly diagnosed for help? She sent me to a Kluge in VA and they said how obvious, and here we are.... you are the parent , you know your child. My daughter had seizures, so that was the neros. reasoning for her delays.

      April 5, 2011 at 09:35 | Report abuse |
    • Wendy

      Thank you for the info...it makes me feel better and hopeful. One thing I am also dealing with is the fact he is very smart and looked it up online and feels he does not have it. He doesn't see it. Explaining his differences is a challenge. He doesn't understand he is different as this is "normal" for him. It is much easier when they are young and I have had him in and out of therapy for yrs. One therapist gave up on him because she could not get him to communicate with her. I am so frustrated looking back on that. There it was in front of her.

      April 6, 2011 at 14:24 | Report abuse |
  17. Randy

    Yes, yes. Children that are autistic grow up to be adults that are autistic. Everyone seems to think when an autistic child turns 18 thier autism goes away. Hardly. The troubles an autistic child faces are nothing compared to the challenges an autistic adult faces in the real world without their parents to serve as a buffer between them and harsh reality. And if someone w/ASD isn't dxd until late in life? In many cases they've picked up many unhealthy coping mechanisms along the way that only add to their problems. I wrote this song for my ASD wife, who was not dxd until she was 46. Please take a moment to read the description as well. http://www.youtube.com/watch?v=j3pklI7fqgI

    April 5, 2011 at 00:17 | Report abuse | Reply
  18. Peter E

    Big surprise there... lucrative medications don't actually help the ailment they were advertised to heal by the multi-billion dollar pharmaceutical corporations...
    If they actually helped, they'd be out of customers, and then how will they keep making multi-billion dollar profits? It is getting harder and harder to come up with new invented sicknesses and conditions to be cured by new lucrative drugs.

    April 5, 2011 at 01:05 | Report abuse | Reply
  19. Dr. Dan

    Is autism genetic, developmental, toxic, viral or some combination of all of the above? We don't really know. I've never seen two autistic children who were exactly the same. Big frontal lobes, small frontal lobes, delayed temporal lobe development, large cerebellum, cranial compression in the posterior fossa or along the floor of the skull not giving the brain room enough to grow. We don't really know. But at least we physicians ought to learn to examine the head. One thing we do know is that overstimulation and excitability leads into most of the behavior problems that parents ask us to treat. The GABA system calms the brain. But you won't find many child psychiatrists or neurologists who will even consider using baby benzo's – low dose valium – to calm a child.

    April 5, 2011 at 01:33 | Report abuse | Reply
  20. Pauline

    I know some people think forcing an autistic child to adapt in a neurotypical world is cruel. But I can tell you that my son is a whole lot happier now that he can communicate and play then before. We refuse to give him the routine he craves. The tantrums have all but disappeared and he's an easy going child! Behaviour therapy combined with meds (Risperidone) worked for us.

    April 5, 2011 at 01:41 | Report abuse | Reply
  21. Pauline

    Also focus on ONE thing/battle at a time! For us it was 2 years of only speech intervention – daily! Then 3 years at a school for Down syndrome kids to improve social skills. Now he's being mainstreamed to enhance his academic/cognitive skills. It's working for us 🙂

    April 5, 2011 at 01:48 | Report abuse | Reply
  22. Dr. Dan

    If most of us catch a virus about once a month doesn't that mean that the fetus and baby in the womb will be exposed to viruses and viral protein byproducts after infection for at least 18 days of development? The fetus is 1000 times more sensitive to toxic chemicals while nerve cells are crawling into position in the brain than during adulthood. And it turns out that the placenta is no barrier to drugs and toxic chemicals. If toxic chemical exposure tears tiny holes in cell membranes it could be that viruses could infect many more cells in particular regions of the brain. Toxic chemicals and viral junk protein don't need to kill cells in order to affect development. When, at age two, brain cells are connecting up with each other previously stored junk could come out and disrupt the developing networks.

    April 5, 2011 at 01:53 | Report abuse | Reply
  23. Dr. Dan

    Some of us are waiting for the study on pitocin (oxytocin) and autism. Oxtocin is at least one key hormone that plays a role in social and emotional development. We know a little more now about high cortisol during pregnancy leading to stress-related illnesses later on. But we haven't looked at low cortisol effects yet. Cortisol affects almost 5000 regulatory genes. Several hormone deficiencies interacting -cortisol and oxytocin for example – could lead to gene regulation problems in utero. Cortisol breaks down junk protein. It stops inflammatory reactions to toxic chemicals. It slows down scar formation. And it is hugely important to mother and baby in adapting to labor and delivery.

    April 5, 2011 at 02:09 | Report abuse | Reply
  24. Male early 30"s Silicon Valley

    I was not Dxd till was 29 by then it my the co-morbid pathology was in full effect and had been so for the last 16 years. For most of my life I have none that I was different I just was never able to nail it down. In short school was hell, see when you are put in and out of mainstreaming coupled with being in both in special Ed and the all the "gifted" programs; what is the then child supposed to think and more how do there peers treat them? See no one knew what to make of me, over the many years the school district threw just about every test they could think of at me. My scores were all over the place, only one test was consistent over the years was my IQ.

    As the years progress devoid of meaningful friends my only solace were my books, I am so thankful for the internet as I gained access around 94 when I was 14. Long story short, I am dead broke, I have never lived on my own but on rare occasions I can hold down a job for a bit but never more then a year. My longest job was working for NASA apparently at one time I was quite the promising Applied Mathematician but that never came to be. So sit and wait for the phones calls that never ring, emails that are never return for jobs that I know realistically know that I cant hold for long. So here I sit glued to my screen writhing this in my parents home, place I know that I will never be able to leave. With all the meds, which I could never afford on my own: I fade in and out of my own skewed perspective on reality is my quality of life any better, really its hard to say. I will find out some day when my parents are gone, then I will just be another homeless guy on the side of the road begging. I don't blame anyone certainly not the nero-typicals of the world for how the past was and how the likely future will play out.

    Yes there is SSDI, but since rent alone for a studio apt. is more then 1K which is far more then I would get. Frankly my monthly cost for meds is about 500 on top of rent. Please dont take this the wrong way but the numbers don't lie I will never be able to live a normal life. See this is the problem I may have to commit crimes so I can live just a little bit longer, in which I am sure I will be busted then end up in a psych-ward at the tax payers expense the current cost for one person in that situation would run an annual cost north 330K per year per person. On the other hand prison cost about a third of that just some rough numbers. With the ranks of ASD swelling every year, still to many people see this as just a childhood disorder and that things get easier with age. Well that is in part true if you can afford the treatment in the very early stages but we are talking about some serious money, money most parents just don't have.

    For more insight into adult ASD try wrongplanet.net

    I know this seems off the wall, but for joey this treatment works uf4a.org

    I am sure there will be negative comments after all it is the net but please bear in mind the abstract relations are my forte and not writing.

    April 5, 2011 at 03:31 | Report abuse | Reply
  25. mama bear

    I'm glad that the secretin question has been answered. The people still pushing this on parents of young children are quacks making a buck off of desperate parents. Thankfully we did not use this on our son. I also think that the use of medications for depression may well work to treat depression in autistic individuals who are depressed. I'm glad to see that the studies confirmed that these medications to not treat the core symptoms of autism. There are more many therapies that treat the core symptoms of autism, which have not been mentioned but have made a real difference to our son – specifically sensory integration therapy and RDI. We have not experienced a miracle "cure" but we have seen real progress.

    April 5, 2011 at 04:05 | Report abuse | Reply
  26. Nicole

    It's scary that the only medications that have supporting evidence are antipsychotics... those are very serious drugs.

    My brother is on the spectrum- when he was little he would line things up, made no eye contact, didn't communicate like other children did. I knew he was autistic at 18 months. It was obvious that he was bright, very bright, but different. He was finally diagnosed with PDD-NOS he was 3, it was surprisingly easy given how high functioning he is (having many classic symptoms helped), and went to preschool. His eye contact is better. His communication is better. But I worry... I worry about how hyper he is. I worry about how easily he cries. I worry about when kids start realizing he's different. I worry about anxiety and depression.

    I don't know... we don't need a cure. He's bright- he taught himself to read as a toddler, there are definitely many pro's to the type of brain he has. If he was typical, he wouldn't be who he was. But we do need research- we need to know, when the time comes, how to help him. I don't want him to be relegated to antipsychotics with horrifying side effects. I want to know what type of counseling will work for him when he's 13 and can't make friends. I want to know if SSRI's will help with the OCD type behaviors he's prone to, like it does people with OCD. We need better, more thorough research.

    April 5, 2011 at 06:07 | Report abuse | Reply
  27. brainstem

    For those who are not affected by autism in their family, I suggest walking through the exhibit area of an autsim convention in your town - the quackery and mercenaries are out in droves to capitalize on desperate families - portable hyperbaric oxygen chambers, hair and stool analysis for amino acids, stainless steel food containers to reduce plastic contamination of dry food, suanas for heat therapy, magavitamins galore -- for many, it is a secondary victimization on top of an already difficult situation.

    April 5, 2011 at 07:51 | Report abuse | Reply
  28. L.Dill

    No offense to the "let them be they like who they are" and "I/he/she wasn't diagnosed with autism until they were old" are frankly diluting the real and debilitating diagnosis of autism. Not aspergers, the "cool" diagnosis, but the nonverbal, continuous stimming, in diapers until age 6-7 autism research monies should be spent on.
    Basically the "aspie power" crowd are causing a backlash much like ADHD over diagnosing did. If you lived your life, got a job, paid your bills, went grocery shopping before being diagnosed with ASD, you are harming not helping the issue.

    April 5, 2011 at 08:02 | Report abuse | Reply
  29. john

    This article is factual yet has no real content. If you live where there are limited treatment options, move to the Mid Atlantic where we have awesome services for treating these spectrum children. We have a 7yo son who is high functioning/PDD/NOS/ADHD – we are so lucky to have the remarkable BSC and TSS that we do. For those with children on the spectrum who do nothing but obsesss on ways to help them while you should be sleeping, I pray for strength in your direction. It does get better.

    April 5, 2011 at 08:33 | Report abuse | Reply
  30. Rozelle

    So how is early intervention at 2 or 3 to work when most state mental health systems say a child has to be 4 years old to be tested?

    April 5, 2011 at 08:58 | Report abuse | Reply
  31. Jim

    Others have stated similar frustrations, but I know from experience with my child that we tried to have our son tested for years, and the local medical personnel in the Cincinnati area postponed, and said, 'Let's wait and see;' they did everything short of denying our son had a problem. Had he been tested earlier, we could have received so much more help from the local schools, but without a diagnosis, the schools could offer nothing. How do you tell your doctor(s) to test a child when they are dead-set against it?

    April 5, 2011 at 09:42 | Report abuse | Reply
    • Wendy

      I understand completely! Wow. Our son is now 19 and I'm still fighting for a diagnosis. No they don't want to test them for some reason...giving me the excuse that it is such a wide spectrum. I feel your frustration, trust me.

      April 9, 2011 at 12:00 | Report abuse |
  32. Dood

    Our son is 5 and has Autism and ADHD PPD-NOS. His speech is delayed, he is potty trained. He is very hard headed and has meltdowns daily.

    We had him on Strattera but that didn't work so we just changed him over to Intuniv. The gluten thing doesn't seem to make a difference and you can't wear him out. He's NEVER tired, even after running around all day at the park. WTH???

    His speech is improving and he is in a mainstream pre-k class. It's just his behavior that's killing us.

    April 5, 2011 at 09:54 | Report abuse | Reply
    • TheNumber

      Hey, Dood. My Autistic son is 10 now and is doing great (he's more on the severe end of the spectrum.) Something we found early on was that giving him access to computers & video game consoles (his favorites are PS2, PSP and the Nintendo DS Lite) was a great way for him to channel his energy and his mind. He is very creative and he is always finding new ways to express himself: goanimate.com, MS Paint, Roblox, Minecraft, etc. He picked up the computer very quickly and completely taught himself.

      We do have to be careful, however, when he comes home from school out of sorts – he gets a little rough with the keyboard & monitors.

      There are a lot of things parents do, some work and some don't. We try to follow his lead and he's a very happy, intelligent, sweet boy.

      Best of luck!

      April 5, 2011 at 10:36 | Report abuse |
  33. Greg

    What I detest about the health-care reform is that it does nothing to tackle the main problem - poor drug treatment. Most doctors hand out the same medication over and over with no benefit for the patient. Drug company gets richer, the doctors get money for something a high school dropout could do - pimp drugs, the government and consumer wastes money. SSRI prescriptions get handed out like expensive aspirin; a monkey could do that. Surgeons earn their money but some doctors are just legal but unethical drug dealers. The monkey would do better job of curing depression or getting an autistic child's attention. If the lab can't detect a specific problem in a person the drug treatment is just guess work.

    April 5, 2011 at 10:20 | Report abuse | Reply

    My son will be 31 this month and has Asperger's but has no official diagnosis. My grand-daughter, 11, also has Asperger's/OCD and received a formal diagnosis at 5 yrs old. While researching her symptoms I came across a list of 20 syptoms of Asperger's and it was a light bulb moment for me as he had 18 of the symptoms. I had always known my son was different but...He never really fit in, had no real friends, and was really bright but struggled in school. He did well in college and now is a special education teacher. He had few relationships but has finally met and married a wonderul woman who understands Asperger's and accepts him as he is.

    April 5, 2011 at 10:43 | Report abuse | Reply
  35. Michael

    @ L.Dill,

    Soon, there will be no diagnostic division between autism and asperger's. It will simply be autism spectrum disorder (ASD), and with good reason. The contrasts you described are at opposite ends of the spectrum, but it is a spectrum and there are many who fall into it somewhere between those two extremes and as a result are marginalized. Not all severely autistic persons are permanently disabled (though conditionally they may be). Not all mildly autistic persons are fully abled (though conditionally they may be). To my mind, most autism research and treatment is taking the wrong approach. Instead of trying to find a way to eradicate autism (searching for a genetic marker for pre-natal testing or drugging existing autists to make them 'normal'), how about figuring out what accommodations are helpful? I too am autism.

    April 5, 2011 at 10:49 | Report abuse | Reply
  36. Jenny Diehl

    Our son is 3 years old and has Autism, he only spoke a few words and was very violent and aggressive and overly active, but after reading the book, "Healing our Autistic children" by Dr. Julie Buckley and a few other good books (doing research) I put him on the gluten/casien free diet and added several supplements (based on research) and got results FAST, within a week he was speaking in sentences and much calmer. The supplements I used are ones that I actually sell on my web portal, but had not given to him before the diagnosis: http://www.marketamerica.com/jendiehl After researching I saw that he had a need for digestive help (direct connection to the brain) and started him on the Isotonix Digestive Enzymes with probiotics and Ultimate Aloe Juice, then added the Spectrum might a mins (multi-vitamin developed ESPECIALLY for children on the Autism spectrum) and Isotonix b-complex (b vitamins are critical, helps with the stress/calms them..AND me, I take it TOO). Isotonix vitamin D (deficient in that, most people in the north are, especially for people with Autism) and Isotonix opc3 which is a POWERFUL anti-oxidant with an anti-inflammatory quality (their brain actually has inflammation, this can help). We also give him omega 3 (which is in the multi-vitamin). I would HIGHLY recommend these products, they are in a powder form that you add water to and drink, they absorb FAST with NO waste and can even be made into popsicles. It CAN HELP!

    April 5, 2011 at 13:41 | Report abuse | Reply
  37. Dewayne Brake

    The medical industry has and will continue to do whatever it can to find something, anything, that can marketed for the control of Autism THREE children responded to a drug and it was used on how many kids for how long? ARE THEY SERIOUS! The Wakefield Vaccine Fraud was based on a dozen children and the medical industry, media, and the public wanted his head on a platter. This is the REAL world of Research and Business! Follow the money and you will find the Rats! If this was not such a serious situation it would be funny. Hell, it is still funny!

    April 5, 2011 at 19:31 | Report abuse | Reply
  38. Chris P.

    Anyone who has determined that ABA is torture either has not see it done, has not seen it done correctly or has not experienced the power that positive behavior change can bring; it opens up opportunities that would not otherwise exist. I have seen it over and over and can not be deterred from supporting ABA.

    April 5, 2011 at 23:14 | Report abuse | Reply
  39. Curtis Maybin

    Finally we a starting to see some results of the studies being done. I am not a fan of medication but has seen the calming results for some children. I have seen a 2 year old with no language turn into a 7 year old telling jokes and laughing also reading aloud and enjoying it. ABA does work and has positive results for lots of kids out here in California.

    Autism News

    April 6, 2011 at 02:00 | Report abuse | Reply
  40. latedx

    Actually Ritalin eases my symptoms. It even makes me talk more. Actually I want to talk to people and can't stop. Sensory issues are worse on it and I seem to get into most trouble while on it because I might unintentionally say something rude without realising. Off medication I don't feel like talking to people at all. I've been on SSRI's and they've helped a great deal too. I'm HFA and while on Ritalin I still have some autistic issues they aren't as bad as when I'm not medicated. I even take breaks to see what I'm like off medication.
    I just wanted to share that because just because medication doesn't always work for most people with autism, or help all the symptoms, it can work in some and provide some relief.

    April 7, 2011 at 00:15 | Report abuse | Reply
  41. JK

    Glad to see that mainstream research is finally supporting what many parents have known for years...intensive behavior therapy can be very effective for many kids on the spectrum. The younger, the better, but I don't think it's ever too late to try. My daughter was diagnosed mild-moderate autism at age 2.5 and we started an in-home ABA program for 20 hrs a week right away. At age 15 she's a little quirky, but is a thriving 9th grader in a public school and is involved in multiple extra curricular activities at school. She's on Zoloft for anxiety and it is effective, so I don't agree that meds can't help with some symptoms of autism. I teach high school kids on the spectrum and I can surely tell when some of them have missed their meds! I prefer natural interventions, but for some people natural supplements are just not enough. It's all about trial and error (or sometimes trial and terror!).

    April 7, 2011 at 08:25 | Report abuse | Reply
  42. Pauline

    The people who worry about meds: you wouldn't give insulin to a non-diabetic because just like antipsychotics are bad for normal people, but does that mean you shouldn't give insulin to diabetics?

    April 7, 2011 at 13:06 | Report abuse | Reply
  43. Pauline

    Oeps, bad typing! Sorry!

    April 7, 2011 at 13:08 | Report abuse | Reply
  44. Wendy

    My son feels he doesn't have aspergers even though signs are there. He is 19 and we want to get him diagnosed. This is hard to convince him. Is it possible he doesn't feel different from others?

    April 14, 2011 at 23:43 | Report abuse | Reply
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